Our child will lose a service at the end of February. We are mourning this upcoming loss. I am especially upset by it, not only because my child is losing the structured opportunity to play with a child who has become his friend over the last two years, but also by the way it all came about.
The facility notified me in November that my child’s funding had lapsed. To my astonishment, my child had been on a 30 day contract during that month.
With regional center services (only in California), most contracts are six month or one year contracts. In my experience, a 30 day contract with a service that had been ongoing for years, signaled trouble. In years past, this facility always informed me when trouble was brewing. This time, they did not. I was quite upset that I had to tell my child that he couldn’t go to his service that day. He doesn’t always respond to quick changes very well.
From that point on, I was heavily involved in attempting to keep this service. The service itself is a partner social skills group that had been in place for two years. To fight the possible loss of this service, I felt I had some “weapons” in my arsenal.
How did this happen?
My child was put on another 30 day contract to give the regional center and the facility more time to work out what they were going to do with this service. The regional center was questioning the need for this service. I tried to convince them that my child still needed assistance in social situations and was still having challenges, and a partner-related service gave him (and his partner) one on one support.
I also countered with a promise for two years earlier, that the facility would “advance” my child into a social skills group situation. He had begun with two such services but one of them was “adjusted” to this current partner situation to assist my child with regulation.
Unfortunately, within the next 30 day contract period, the regional center could not be convinced of the continued need of this partner service.
How do we handle telling our child his service is ending?
Because the service hasn’t stopped quite yet, we’re still dealing with our child’s questions about why he “no longer can play with ______.”
What have we told him? The truth, with a positive spin.
We tell him his regional center does not want to fund the service any longer. Then, we go on to say that the reasons for this is because the regional center and the facility believe he’s done such a good job of learning how to play that he can make his own friends and do really great.
We add that he still has a social group once a week. There are friends he’ll still get to see every week, just no longer twice a week.
Having one remaining social group is important. There is still a social group with trained professionals who will continue to help our child learn skills for socializing.
What bothered me about all of this?
First, the facility’s rather cavalier attitude that is just as beneficial if the parents of a child who struggles with social situations can easily replicate these classes/groups themselves.
Sometimes, parents may be reasonable substitutes but not always. We’re not professionals. Therefore, it does give us some relief that professionals work with our children. Since our child still struggles, as a concerned parent, I would like those areas addressed by a professional. I know a lot, but I’m simply no substitute.
Additionally, I felt a lack of support from the social skills facility during this entire situation. This lack of support was something we were not used to, either. Even after appealing all the way to the director of the facility, I still don’t understand why the facility seems so casual about losing a service for a child they’ve had in their system for almost six years. My child was not properly supported in this situation.
In the past, when money wasn’t such an issue, supporting the services of autistic children was almost second nature. Facilities would tell parents that they have their back, we’ll get that service because we see the need. What happened to that support?
I’m still not sure. Is it because money is scarce these days? Is it because services are simply being limited across the board? What kind of pressure are regional centers putting on facilities?
The loss of a service may feel like a sad event for you and your child. Especially if you feel that service is still needed.
My advice? You can always fight, and don’t let anyone tell you you can’t! Keep in mind, however, that you may still lose the battle. For me, advocating for my son is a muscle I exercise quite frequently. Sometimes, it’s “little stuff,” and other times it’s as big as the loss of a service.
Also, talk to your child about what is going on. Try to do your best to explain the “why” of it all, yet find a positive angle. Try not to take out your angst on your child. I haven’t once dissed the social skills facility in front of my child. There’s no reason for him to feel let down by them. That’s my job to take on, not his.
If you’ve done all you can, let it go and more forward to the next step. Losing that service is over, so consider what’s up next. What can you do to fill the void properly? You never know, maybe something even better will drop in your lap.
Check me out on Twitter @tipsautismmom
Comments